Sorry the update is so late tonight. It's been a very emotional day and I hope I can see long enough to get this updated. I'm going to apologize in advance for any typos.
Bill had a very painful day. They had to change the packing for the wound vac. We didn't know when the wound nurse would be coming so he wasn't given his pain medication enough in advance to really help. The wound is healing well, but it's going to take quite a while to close. He was also tired most of the day and wanted to sleep.
The only therapy he really saw today was physical and the only thing she did was sit him on the side of the bed and had him stand to pivot to his chair. That's the same thing she did yesterday except she didn't put him in his chair, she put him back to bed. She did no leg exercises or stretches at all. This was a different therapist than the one who has been working with him. I told the case manager about it today, especially the fact that she's about 6 months pregnant and probably shouldn't be working with patients. I really only brought it to the case manager when she came in to talk about going to the rehab hospital. She said she had read the pt notes and saw that he wasn't walking so he wasn't ready for rehab. I told her he walked Wednesday across the room and she was very surprised.
The reason she came to the room is because Bill is being discharged Monday. The rehab hospital won't take him because of the wound vac. Of course he still has the trach, feeding tube, still hasn't been able to urinate on his own or control his bowels. I know that's way to much information for most of you but just stating the facts. The speech pathologist wants to start decreasing the cannula size, but Dr. Hosenpud apparently doesn't share that opinion and indicated to the case manager that the trach and the feeding tube are both permanent. Nothing has been said to me about it.
Anyway, since he can't go to the rehab hospital, they are now looking at skilled nursing centers. From the list they gave me, and from what I can find out online, the top 2 they have recommended are just glorified nursing homes. The time spent with RN nursing is less than 30 min with most of the care coming from CNAs. I'm not happy that they waited until Friday afternoon to start looking for a bed. To top it off, they want me to transport him to save the cost of an ambulance. Now, I'm already paying for someone to sit with him in the evenings, I think I can afford the $100 co-pay for the ambulance. (Can you tell I'm a little angry)? He also has to come back to Mayo on Thursday for his biopsy.
Bill knows something is going on and I'm going to explain it to him tomorrow. I'm terrified that when he realizes what kind of facility it is he's just going to give up.
Anyway, I've cried most of the day and evening and I go from sad and scared to really angry. It seems like Mayo is saying that they fixed the problem he came to have fixed. And, while they're sorry he's had all of these complications, they're satisified that they did their job.
I'm so tired that I can't think of all the things I need to ask, like can this place handle his anti-rejection meds and make sure they are given on time.That's just 1 of many. So, I need feedback. If this was your husband/wife, what questions would you be asking. For family members, I would ask that you just email me or comment here. I'm too emotional to hold a coherent conversation. The kids and I have been texting all evening to get their input. I love all of you, but talking is not an option for me right now.
Sorry this isn't an upbeat update. But, this is how the day has gone.
It appears to me that you are being left in the dark and informed on a need to know basis. Whose idea was it to release him before the wound vac comes off? I would speak with the hospital adminstator and find out what is going on. How can they release a patient whose bowels are unstable and who has not urinated on his own. When were you going to be told about his trach being permanent? There are a lot of unanswered questions. I would definitely talk to someone in charge. I hate to hear this...it seemed things were finally going in the right direction. Hang in there keep me informed Love you Phillis
ReplyDeleteLots of things come to mind (some of them probably illegal!) but I think that you should request a meeting/conference with the entire team and ask them as a group to explain to you exactly what the status is regarding the trach, feeding tube, bowel/bladder situation, wound vac. In my view, his situation generally is too complex for a typical skilled nursing facility. CNA's are not trained or equipped to deal with the type of care he needs at this point, and typically, the patient/professional ratio is too high for him to get the attention he needs. Would he qualify for a VA rehab placement? I have no idea what the parameters for that are or what the availability is. In my view, he is not in any way ready for any placement except a hospital placement until some of the other issues are resolved/improved.
DeleteA nursing home placement would definitely jeopardize his situation. I know whereof I speak--8 years at Danville Care puts me in the expert class!! The very last thing you should be doing is transporting a person that can't transfer without help, walk or communicate clearly. My only real piece of advice is, don't agree to any placement until you have made an unscheduled visit to the facility and have sat down with their administration to discuss everything. Sorry for the typos, I'm a little steamed. Call me when you need to talk. Love you, Sissy.